Hi
I’ve got OC high grade serous stage 3b and have had chemo and debulking op. I’ve been on niraparib for two months. The first month was fine apart from insomnia and constipation. I’ve lately started having occasional twinges in abdomen, looser bowels and am feeling exhausted. Has anyone else experienced this sort of thing while on niraparib? Thanks x
I went onto Niraparib in January 2024 (after debulking and adjuvant chemo for Stage 3C HGSOC) and I started on 300mg which ended up being too high for me. I initially had high BP. I too had fatigue. The fatigue ended up getting worse and worse and it ended up being anaemia and I ended up having two blood transfusions. They dropped my doseage between the transfusions and I am now on 100mg and those side effects have resolved and I am functioning normally with hardly and side effects now since around June. My energy levels are now great! It depends on your body and everyone is different. Speak to your CNS to make sure all is ok and hopefully after you a few months you will find where sits good for you. My CA125 is rising very slowly so I know I will need more treatment but the niraparib is allowing me a longer break than I would have needed for more treatment and so I just continue on this path. Love to all the OC ladies out there living life with this!
hi I’ve been on Niraparib since July. Initially 200mg but this affected my neutrophils, platelets and red blood cells so my oncologist stopped it to allow me to recover for a couple of weeks. Also had to inject myself to help boost the neutrophils. I then started back on 100mg for a couple of months. I’m now alternating daily between 100 and 200. Got my bloods tomorrow to see how I’m doing on this new regime. 🤞. I’ve also had lots of pain and twinges in my abdomen, and I was told it’s likely to be scar tissue but please ask your own team about this. I’m more constipated then anything else which I think aggravates my abdomen pains. Lack of energy continues to be a problem which really gets to me. My oncologist assured me that things should settle once I’m on the right dose and my body adjusts to it. I hope he’s right. Good luck with everything. It’s all a rollercoaster unfortunately. 😊
Ps. have you signed up to Target Ovarian cancer web site? Lovely nurses on there who you can call and chat to.
Thank you for your reply and reassurance. I do appreciate it. After just speaking with my CNS, they’ve agreed to send me for an urgent ct scan. It seems odd that for the first month of being on Niraparib I had no pain or tiredness… Rollercoaster is an understatement. I’m barely hanging on tbh. I will definitely look into the Target website. Good luck with everything too 😊
Hi
I’ve got OC high grade serous stage 4a advanced and have had chemo and debulking op the same as you. I’ve been on niraparib for just over one year now. My dose was reduced to 100mg as I struggled with low neutrophils and every now and again I have to have one or two weeks off the drug. I find I can struggle with fatigue and a low blood count but this helps my levels improve and side effects subside. I can get aching joints and muscles after a while and a very stiff neck which can cause headaches in the morning but all that being said I would rather be on Niraparib than not.
I have read quite a few posts on here about the drug and it does seem to effect women differently but don’t be afraid to ask for a break from it now and again if it gets too much.
I hope that helps and good luck with all your treatment.
Terry x
Dear Livica:
Like others who’ve responded, I was unable to take 300 mg of Niraparib due to side effects (terrible headaches and 30+ episodes of heartbeat skips a day). I thought 200 mg was working fine, but my blood work showed a dramatic decrease in neutrophils - so I dropped down to 100 mg a day. I have been on 100 mg a day since August 2023 and remain NED. I was diagnosed Stage 3A2 after surgery and had 6 rounds of carbo/taxol - which ended in April 2023.
I had a lot of abdomen twinges and pain the first year I was on Niraparib and it’s really only improved the last couple of months. I insisted on two CTs and both showed arthritis in my hip but no evidence of disease.
I don’t know what to attribute the abdominal pain to; my doctor said it could be scar tissue or the arthritis. I also have painful knees and ongoing neck pain - which are also chocked up to aging and menopausal/hormonal changes.
My CA-125 has never been elevated so it’s not a good indicator for me. That said, I continue to get it tested every 3 months and see my oncologist to discuss results and any pains.
I recently purchased a grounding mat - although I readily admit that this doesn’t have sufficient scientific data. But if it can alleviate some aches and pains without meds and not cause harm, I’m willing to give it a go.
I also try to take 2 walks a day for a total of 4 miles. My doctor said to keep moving or I’d feel worse.
What helps most - mentally, at least - is Pilates. I go 2-3 times a week and I feel like that “grounds” me in a different way.
I’m sorry I can’t be more helpful. But I hope there’s some comfort in knowing others have a similar experience and some tools have helped.
I am sending you my support and well wishes.
Hi, I’m HGSOC 3C. Debulking, 6 rounds of chemo then started Niraparib in April 24. Like you, first month absolutely fine except for BP which shot up instantly. It’s well controlled with Amlodipine.
My symptoms/ side effects started 4-6 weeks after starting the drug - extreme fatigue, very loose bowels, nausea. I felt extremely unwell for around one month and started to panic that these were recurrence symptoms rather than drug side effects, especially since my CA125 increased from 11 to 15 in 4 weeks. My routine scan showed NED and the aforementioned symptoms have all but disappeared, with the exception of loose bowels which I’ve had since debulking/ bowel resection.
That was July. 4 months on and my CA125 continues to rise, slowly. It’s now 22, but I feel well and my team are happy to hold off imaging until my next routine scan in Jan. I’m on 200mgs and it’s never adversely impacted my bloods.
Long story short- I think suddenly being floored by Niraparib in month 2 is very common. Hopefully you’ll adjust to it soon. X
Hi Livica,
I had stage 4b high grade serous diagnosed in Feb 2023...had chemo/surgery/chemo. Was NED for 7 mths then went on niraparib starting 200 mgs on Jan 2024. In Feb 2024 while still on niraparib I rec'd a platelet infusion as my platelets were down to 17. My neutrophils were extremely low as well had to hold off for at least 2 - 3weeks til it shot. Onc decided I should go down to 100mgs which only caused high blood pressure and a bit of insomnia too, some nausea, some exhaustion and a bit of constipation but other than that I was ok after taking the 100mgs. Had to stop niraparib in August due to rising of my CA125. Now I'm back onto my carbo/taxol again (1st line) with Avastin added to it this time. Wish me luck with it as I'm starting next week.
I wish you all the best!
Thank you for all your support. It’s been interesting and reassuring. I think the main reason why I’m panicking so much is that I’m not actually NED ☹️ I’ve got a 12mm nodule near my liver. I also had a reaction to paclitaxiel/bevacizumab and caelyx so that reduces my future options.
Wishing you all the best of luck in your journeys!
crossed that the scan is clear.
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